Why you should care

Because this is how tragedy can fuel change.

By Alikay Wood

The Daily DoseMAY 18 2017

It was a beautiful sunny spring day in Sheffield, England, when Tony Bland — aka Blandy — headed to Hillsborough Stadium for the semifinal football match between Liverpool and Nottingham Forest on April 15, 1989. The avid Liverpool supporter, 17, was excited to see a rematch of the semifinal game from the previous year. He had recently started working and saved his money so that he could afford to go in person.

Tony stopped at the Arkle Pub and had a pint with other fans before heading to the stadium. But within 20 minutes of the match starting, he was lying unconscious on the pitch, one of hundreds crushed in the worst stadium disaster in football history. Ninety-four people died that day from injuries sustained in the crush. Hundreds more were injured, three with serious brain injuries. Lee Nicol, 14, died in the hospital four days later, and Bland and 22-year-old Andrew Devine survived but were left in a persistent vegetative state (PVS).

A PVS victim “continues to display organized brain activity,” says Ronald Munson, a philosophy professor at the University of Missouri–St. Louis, and expert in medical ethics. He explains that PVS is different from other types of vegetative states because the patient is not brain-dead. “The brain stem continues to function and to provide all the automatic processes needed to sustain life. What [is] missing … are the higher functions of the brain, the ones we associate with thinking and feeling and being a person.” Within a few months, Tony’s family and primary physician, Dr. Jim Howe, had determined that there was no possibility of the young man recovering, and they made the difficult decision to end his treatment. Back then, however, Britain had no legal standard for how a patient like Tony should be treated.

Tony’s feeding tube was removed on February 22, 1993, the first time his family had seen his face, unobstructed, in almost four years.

In August, Howe reached out to Stefan Popper, the coroner handling the Hillsborough victims, to inform him of the plan to remove Tony’s feeding tube. Popper quickly responded that if Howe followed through with this plan, he would be charged with murder. The case went to court, protesters gathered outside the hospital, and Howe received hate mail. But the Bland family refused to back down.

Howe and the Bland family’s argument rested on the distinction between actively ending someone’s life and stopping treatment. Munson calls this “passive euthanasia.” It doesn’t require “pulling the plug.” The doctors would simply stop providing Tony with the artificial nutrition and hydration keeping his body running. Those opposed said this would essentially starve him to death. The House of Lords agonized over the decision but eventually ruled that because Howe would not be actively causing Tony’s death, removing artificial nutrition and hydration was permissible.

Tony’s feeding tube was removed on February 22, 1993, the first time his family had seen his face, unobstructed, in almost four years. He died a few weeks later, on March 3, 1993, the first adult in the United Kingdom to legally die from a lack of medical care, and the 96th victim of the Hillsborough disaster.

A priest did try having Howe charged with murder but failed. “At the time, we all felt, and still feel, that it is an affront to human dignity to keep a body with no person in it alive for years,” Howe wrote in a 2006 piece for the Journal of Neurology, Neurosurgery & Psychiatry.

The case set the standard for how PVS care would be dealt with in Britain, the most important precedent being court involvement. Even if the doctor and family are in agreement, a legal judgment is still required. As of 2013, fewer than 100 similar cases had reached the court, but in January 2017, Noel Conway, a man with a terminal disease, hired lawyers to challenge the ban on assisted suicide in England, and his case could be the next landmark right-to-die decision in Britain.

It took 27 years to determine what actually happened at Hillsborough. After the longest inquest in British history, last year, a judge ruled that the deaths at Hillsborough were not caused by rowdy fans, as long suspected by authorities, but by incompetent police. Doctors at the trial testified that if Tony had received better medical care immediately after being taken to the hospital, it’s possible he wouldn’t have ended up in a PVS. “We are as sure as we can be that given a choice, he would have wanted to die with dignity, once every chance of recovery had disappeared,” Tony’s father told the court during the inquest.

The other PVS victim from Hillsborough, Andrew Devine, is still alive. Five years after the disaster, and one year after Bland was declared legally dead, he began to show rudimentary signs of communication. The Devine family have mostly avoided the press, but his siblings confirmed to the Liverpool Echo in 2014 that Andrew was living at home with his parents. The 47-year-old requires a wheelchair, can only eat pureed food and cannot communicate verbally.

The Blands have never wavered from their belief that their son lost his life at Hillsborough Stadium.

The Bland family and Dr. Jim Howe did not respond to requests for comment, and the Devine family could not be reached for comment.